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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Oct 17 5:52am | Replies (571)

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@jpb1055

Two and a half years ago after recovering from prostate cancer where I received seed implants and external beam radiation. I’m not sure if that has anything to do with my issue but 3 months later, I started feeling numbness in my right pinky toe. Just the inside of the toe. I have had lower back issues since my twenties because of sports. Sciatica is something I have lived with for many years. The chiropractor has been the answer until now. I had an MRI done not long after in early 2019 that showed a degeneration of my L3-L4, L4-L6 discs with disc herniation and mild Spinal stenosis. I had Physical Therapy, and three epidural injections over the course of several months with no effect on the numbness. One of the steroid injections was at the L5-S1 level and I was unable to walk far without a lot of pain in both hips for about 3 days. The numbness was continuing to spread along my right toes and right side of my foot eventually to the left foot toes too. The toe numbness was and still is only on a certain inside part of the toes. I was experiencing some pain in my back that was resolved with chiropractic visits but there was numbness down my right thigh, and I noticed a sore that was not healing. About a year ago I was able to sleep on my stomach and sides without any problem. Then over the course of the year I could not sleep on my stomach or either side without experiencing numbness down my right leg and foot. I went to a neurologist who did an EMG test and biopsy down my right leg. The EMG showed normal long fiber nerves but less and less short fiber nerve presents down my right leg His diagnosis was idiopathic short fiber neuropathy and prescribed gabapentin. I started to notice some mild numbness in my buttocks and groin area too. In December 2020, the tingling and numbness in my feet had spread to from the toes to my archs. I had a laminectomy in March of 2021 which has helped some back pain but the numbness down my right leg is still there and now the neuropathy has been increasing at a faster pace, with daily increasing numbness in both feet, only the short fiber though. I have good strength in my muscles. I have increasing tingling and numbness up my right calf and shin to the knee. I have lost right knee reflex, but the left knee seems okay for now but there is increasing tingling and numbness in the shin and through my groin and buttocks. I have foot and ankle swelling and I wear compression socks almost daily. I sleep in a recliner in my living room now. Also, wearing tighter pants causes more tingling down my legs. I cannot drive far in my car without feeling numbness creeping down into my feet. The short fiber numbness has increased in both feet to the bottom and heals, pretty much the whole foot and creeping up the legs. It is daily. My surgeon thinks I need more time but I feet like time is running out on finding answers. My neurologist has referred me to USC in Los Angeles. Now he thinks that maybe there is something going on in my pelvis or hips. I never had an MRI of anything but my back. My primary doctor did an ultra-sound of my legs for low blood flow but that appears to be okay. I have been searching the internet for answers and came upon this web forum and I read these stories and it made me very emotional. I have tried to maintain my feelings in front of my wife because she is an extremely emotional person, and I try to keep a positive outlook but that is difficult. The gabapentin, 300mg two to three time a day decreases tingling and numbness, but I am looking for more than just masking this problem. Getting in to see a doctor takes weeks and I get worse it seems every day. It is consuming my life just dealing with it. I have been very active in the past, but this has limited me to just getting by from day to day. Wearing shoes is so uncomfortable so I wear some sandals with good arch supports and a dimple pattern on the soles that have made wearing anything bearable. Any guidance and suggestions are very appreciated.

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Replies to "Two and a half years ago after recovering from prostate cancer where I received seed implants..."

Hello and I hate to hear what you are dealing with. I have been battling Idiopathic Small Fiber since 2014. I was diagnosed at the Rochester Mayo Clinic. I will be 100% transparent with you. I have never missed a day of work but my unbelievable pain is a cross I just bare. Healthcare has declined and no one truly gives a crap about me and my horrible life. Every road is a dead end and there is no hope in sight. That is the unvarnished truth. I am just trying to stay sane. I have tried it all and nothing has helped me. Doctors act as if I am am pretending to be so miserable. Sometimes I wish they could experience what I feel 24-7 and maybe they would be more interested to help. I pray your journey is better than mine.

Hello @jpb1055, I would like to add my welcome to Connect along with @forest2005 and other members. Thank you for sharing your neuropathy journey. I know it can be extremely difficult at times to deal with the symptoms. I've found in my own experience that you sometimes just have to take things one day at a time, one step at a time and smile at the world to create your own new normal.

@artscaping and other members have had success and some relief using Myofascial Release Therapy (MFR). There is another discussion where members have shared their experience and it might be helpful to see if it might be an option for you.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you tried any complementary or integrative therapies? There are some ideas listed on the Foundation for Peripheral Neuropathy website here: https://www.foundationforpn.org/living-well/integrative-therapies/